Baby Ivan’s early Christmas gift

DUBAI, United Arab Emirates – Call it a mom’s unconditional love.

If all goes well, an infant with a rare liver disease will be celebrating his first birthday on November 29 with a new organ donated to him as a gift by his mother, Fatima “Fatz” Reverente Burlaos.

Baby Ivan underwent a 12-hour liver transplant procedure at Chang Gung Memorial Hospital in Taiwan on November 6. His mother had an 8-hour operation where doctors took a portion of her liver to replace Ivan’s, which has failed to function as a result of his ailment, biliary atresia, caused by the absence or obstruction of the bile duct between the liver and the small intestine.

“The survival rate and success of the transplant are better if the donor is of the same blood type and is a direct member of the family,” Burlaos said, adding that she and her son have an A positive blood type.

Burlaos said she did not have second thoughts about donating a portion of her liver to her son after it was established  that she’s fit to be a donor.

“It’s a natural thing to do. I did not think twice. I did not bother thinking about what would happen to me. It’s a fight to the end for Baby Ivan. What am I a mother for if I’d deny Ivan what he needs to live?” Burlaos told Rappler.

Complications

Burlaos developed post-surgery complications a week after leaving the hospital’s intensive care unit (ICU) section, where she was placed immediately after the operation.

“A few days after being out of ICU, I experienced severe pain. There was burning pain on my shoulder and severe pain on my lower left abdomen. The CT scan showed there was a leakage on my reconstructed bile ducts. The doctors managed to drain the bile and I was relieved,” she said.

As of press time, Burlaos was under observation after having been transferred back to the ward with a drain in her mid-chest.

Burlaos, who shared the same ICU section with her son, said she was overwhelmed with joy seeing him after the operation. “I could see him but was not allowed to come close. I was having tears in my eyes looking at him,” she said.

Advice

Citing doctors’ advice, Burlaos said she and her son may have to stay in the hospital for the next 3 months so that recovery can properly be monitored.  

The liver, a tri-lobed organ, regenerates. The small portion of Burlaos’ liver transplanted to Baby Ivan will grow; likewise her liver will heal and restore itself.

Asked if she will let her son know, when he grows up, that he underwent a liver transplant and that she donated a part of hers to him, Burlaos said, “Definitely.”

“I will tell him everything that we went through. Every detail. We’ll tell him we did that because we love him; so that his life would go on; so that we can be with him for as long as we live,” she said.

Citing her post-surgery complications, Burlaos said she did not realize it was hard to be an organ donor. “I was not that fit. From the onset of learning about my son’s affliction, I have been too stressed out,” she said.

Baby Ivan had been diagnosed with biliary atresia. This causes bile, excreted by the liver to the intestine for digestion, to be retained instead, which results to organ failure.

Failure

Doctors at the Intensive Care Unit of Sheikh Khalifa Medical City’s Pediatric Gastroenterology Hepatology and Nutrition (PGHN) in  Abu Dhabi, where Baby Ivan had been confined since early this year, had been wary of his health because his liver had failed and his body had not been responding well to treatment to keep him alive while awaiting transplant procedure. 

An August 13 medical evaluation report on Baby Ivan’s condition prepared by Dr Mohamad Iqbal Miqdady,  PGHN head, stated that the infant had been having “episodes of sepsis and uncontrolled ascites.” Sepsis is a medical term for the body’s life-threatening response to infection; ascites refers to the accumulation of fluid in the abdomen resulting from a severe liver disease.

Dr Miqdady said it was “very difficult to control” Baby Ivan’s ascites despite an increase in treatment.

“I am still concerned about his condition and the lack of improvement…of the ascites,” said Dr Miqdady in his report, a copy of which was obtained by Rappler with consent from Burlaos.

Liver transplant is not available at the Sheikh Khalifa Medical City or anywhere in the United Arab Emirates.

A procedure called “kasai” had been done on Baby Ivan in which surgeons carefully removed the damaged ducts outside the liver and used a small part of the baby’s intestine to replace the ducts at the spot where bile was expected to drain. The procedure is named after Dr Morio Kasai, the Japanese surgeon who developed it in 1951.

The operation, done on June 3, 2014, to save Baby Ivan, did not work.

In the US, biliary atresia, a birth defect, happens at a rate of one out of 15,000 babies.

Support

Burlaos, and her husband, Rodney Ryan, needed to come up with AED400,000 for Baby Ivan’s liver transplant.  To this end, calls for support through a Facebook page, “Be a Hero for Baby Ivan,” was met with overwhelming response from various community-based groups in the UAE and the region – from car clubs to musicians, photography associations, as well as marathon and mountaineering groups, spearheaded by the Alpha Phi Omega International Fraternity and Sorority, which the Burlaoses are members of.

Burlaos said they were referred to the Taiwan hospital by a friend in Ras al Khaimah whose child underwent the same procedure  in 2011.  

Burlaos has a degree in dental medicine at Ago Medical and Educational Center-Bicol Christian College of Medicine and works as a dental assistant at Shahama Healthcare Center in Abu Dhabi. Rodney Ryan is a storekeeper.  – Rappler.com